Topic 146: On the Scene: CFP 2002

The decapitation thing is sort of a cut-rate knockoff of a cold war
nuclear scare. I suppose the difference is that the other side is
crazier. Then again, before we had hindsight, maybe the sanity of
soviet premiers wasn't so certain either.

Fred von Lohmann is certainly good on copyright; less impressed with his
social skills after inviting him to join me and Lenny Foner in conversation
at last October's P2P and watching him angle his chair towartd Lenny and
talk only to him for more than half an hour...
wg

I'm looking over some of the notes I didn't post. During Bruce Sterling I
didn't take notes, since his delivery is tough to convey, he posts the
speech anyway, and it's more fun to laugh than annotate.

Notes from health privacy session, Thursday:
Dr. G Fowler addressed genetic privacy. http://www.geneforum.org/
Oregon genetic privacy site.
300 million samples are held in the nation's tissue banks. "You look like a
room of healthy normal people, your tissue samples should each show five bad
genes on the average..." and the data may pose privacy risks to your blood
relatives, he told us.
Privacy is sometimes breached to give patients needed care when something is
identified in a survey of tissue samples. Privacy is also breached
sometimes after studies, to find out what the subjects died of if they are
dead. Some flexibility has been part of the system so far, though federal
studies are better protected than those paid for in other ways.
Who owns genetic information? Oregon had tried to establish that your
genetic material is yours. Question is still a good one. Who owns your
tissue or blood sample? Who owns the information? Do your relatives, cops,
doctors, the military, the courts have rights to the information or the
tissue? Should pharmaceutical companies have rights to your data? How do
we protect people from documented discrimination while letting research
continue? On the geneforum site, people overwhelmingly felt that
violations should be felonies, though they are only minor misdemeanors under
Oregon law.
When you are sick, you want all useful access to your records. The society
in general wants research, wants epidemiology if there is an outbreak of a
communicable disease, and wants privacy. These needs may conflict.
Opt in consent for release to your employer is a strong value, and is
currently at risk during HIPAA review.
13% of our GDP is health. Every health plan will have a staff privqcy
expert by next year. There's a huge demand for HIPAA privacy officers in
health institutions.
Background in short is that Congress failed to pass a privacy bill to go
with new computerized reimbursement and medicare payments systems for
hospitals, and lacking legislation the HIPAA rule went into effect as a
consequence. It was drafted by Clinton administration late in 2000. At
first it seemed Bush would overturn all of it, but he retained most major
sections.
The Bush changes, even though fewer than expected, would weaken the federal
health privacy regulation, and the final day for comment is this FRIDAY, the
26th. There's a letter-writing campaign with a focus on two issues, both
eliminating written consent before medical records are disclosed, and
permitting health plans and drug stores to engage in marketing without
having to get permission
To see an advocate's point of view and to get letter writing help, see
http://healthprivacy.org or for the HMO view, see http://www.aahp.org
To read the regulation and call for comments itself, see
http://www.hhs.gov/ocr/hipaa
The Bush changes also gave parents more rights to the medical records of
their kids (including reproductive and mental health records) but set it up
so that more protective state laws exist, they take precedence, so that was
a relief to many who'd expected him to force that policy nationally.
The Kaiser rep -- Mary Henderson -- spoke of quandaries and over-zealous
regulations, such as a proposed rule that listed kinds of private data
which must not go with medical data for research. The list included date
of birth (needed to understand age-related desease) and location of
treatment (needed by institution to redress any problems at specific
facilities). These costs of compliance were interesting.
One interesting question was about the DNA collected to identify victims in
the world trade towers and whether the feds would keep the data even though
it could reveal secrets of the living relatives. The panelists didn't know
what the status is, but the relatives should follow up.
It was a worthwhile round-up and there is time to act on the federal
regulations.

This event is about to unfold (during wartime!) for 2003. The line-up is
interesting, all kinds of people and issues to catch your eye:
http://www.cfp2003.org/
Wish i could be there. Some of these sound great, some classic CFP
fodder, some new and exciting -- here's a smattering of sessions:
The Patriot II and Electronic Surveillance
Internet Architecture & Free Speech
Human Rights and the Internet
China - Internet Filtering and Free Expression
Promoting Human Rights Online During Wartime
Video Surveillance Tour of Manhattan by the Surveillance Camera Players
Can Free Speech Survive the New Intellectual Property Regimes

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